Michele Rose’s Family

Parents: Lydia and Robert
Hometown: Nassau, New YorkDiagnosed at 5 days, lived 6 days

Michele Rose’s Story

It wasn’t until she was five days old that Robert and Lydia learned that their precious little girl had Trisomy 18. Two days short of her 7th month of pregnancy, it was discovered that the baby’s heart rate kept dropping. A level II ultrasound found that baby Michele had a large VSD. Lydia’s doctor recommended an emergency c-section immediately. Ten minutes after they were prepped and in the operating room, baby Michele was born. She weighed only 2 lbs. After Michele was born, the heart specialist arrived to explain her heart condition and that once she had gained some weight they could discuss repairing her VSD through surgery.

When she was five days old, Lydia and Robert arrived at the hospital to spend some time with Michele when the NICU nurse told them that the results from all of Michele’s tests were back. Lydia writes, “When the doctor called us into a private room, we knew that the news couldn’t be good. He told us he had the test results, and that the results were not good. He then started to use all these doctor terms that neither my husband nor I understood; finally I asked him, ‘Are you telling us that our baby is going to die?’ When he said yes, I felt as if he had just slapped me in the face. I didn’t want to believe him. I thought to myself ‘He is wrong.’ He told us that we should start making arrangements for her. I said ‘No, it can’t be this way.’ When the doctor left the room he too was crying. How could this be? She was gaining ounces little by little. She was responsive to touch, she responded to my husband’s voice as well as mine and especially to her big sister’s voice and touch. I kept crying and saying they have to be wrong. As sad as it is still to admit, they weren’t wrong. She did in fact have Trisomy 18, and we were left to decide what to do next.”

Lydia and Robert decided to share the tragic news with their daughter Nichole first. “We knew that she would be the hardest person to tell. Nichole had waited nine years for a baby sister. When she found out we were having a baby, she said, ‘It just has to be a girl mommy, that is all I want and God knows it.’ So how were we going to tell her that her baby sister was going to die? On the way home from the hospital my husband and I went over what we would say to her. When we got to my mom’s house my husband went to the school to get Nikki, and I stayed with my Mom to compose myself. When Nikki got there with her Daddy we all sat down, I hugged my little girl and cried; I knew this news was going to break her heart. I said to her, that her baby sister was much sicker than the doctors thought. Nikki asked, ‘What do you mean Mommy?’ I just held her so tight and told her, “Nikki, Sissy is going to go home to live with God.” She flooded the room with her tiny tears. That is a pain that I never want to see my child go through ever again. It was too much to bear. I sat there wondering ‘God, how much pain do you think I can bear?’ My heart is breaking for both of my girls now.” After they told their daughter, they called a family meeting that evening. They wanted to tell everyone at the same time.

Lydia shares their last moments with Michele. “That evening, the whole family went to the hospital to say goodbye to our baby. We all took turns holding her, loving her and kissing her. Then we had her taken off the machines. Soon after, Michele took her last breath and she was gone. I held her to the end. I carried my little angel for 7 months, and I carried her to the end of her little life. Still my heart breaks.” The decision of whether or not to remove life support was the biggest one Robert and Lydia had to face for Michele. “It was the only decision as her parents that we got to make. To keep her alive on machines for us would have been selfish. Michele was on a morphine drip to keep her from feeling pain. We wanted to know the moment that she went to heaven, and on the machines we wouldn’t know. They would breathe for her even when she couldn’t anymore. We didn’t want her to suffer so we made the only decision for her that we could. We decided to let her go. Were we ready? No! But for Michele we would be.

Michele was born to us on earth on her Uncle’s birthday, and she was born to heaven on her Grandfather’s birthday. This is still a fresh pain as Michele has only been gone a little over 2 months.” “Faith played a huge role in our decision making. We are a very religious family, and we know that Michele was born to be an Angel. We trusted God and knew that His will would be done. We prayed that if it was God’s will to heal her that he would do so, and if not then to take her home so she didn’t need to suffer. We asked God to give us peace when making the choices that had to be made. We trusted God would let us know what to do next, and he did. Sometimes it doesn’t give me much comfort, and sometimes I am angry. But I have learned that it is ok, and it is all part of healing.” “Every single minute of all six days we had with Michele on this earth are so precious to us. We hold on to those memories with a tight grip. Of the most precious memories I will never lose is the ones when my oldest daughter would talk to her baby sister. She was so kind, gentle and sweet. She never saw anything wrong with her sister. She was never afraid. All she saw was her tiny little peanut, and she knew that she loved her with all of her heart.”

Lydia shares some of the things for which they are especially thankful. “I am very thankful that God gave us the chance to hold our little girl. I wish she was still here with us, and I miss her every day. Each day I want her back more, but not the way she was, not with all the pain. Six days doesn’t seem like much but to us it was all we had and it was a lifetime for Michele.” “She knew that for her whole life, as short as it was that her family loved her with all our hearts.”

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.